i feel so inspired to write...on my way here to commit my musings, i passed a post on the blog of a friend of mine, timed 13 minutes ago - this after months, and months, of her committing nothing to this space about her life....i look forward to going back and reading about what so inspired her today...

in fact, i feel so inspired to write, that i may even be making a resolution...i hesitate to call it a 'new year's resolution', but it does appear to be coming over me at this time of year.  whatever the timing, i feel a resolve coalescing inside of me, a resolve to honour this urge to write...i feel i'm edging toward a commitment to write, every day...something....to somehow commit to the capture in words of something, some moment, of each and every day.

today i have been musing upon the nature of  appearances, a train of thought sparked off in me by a number of recent, disparate, interactions with others around me.

if i'm honest (and what would be the point of being otherwise?) pretty much the whole of my life has been fraught with issues, and learnings about how i look to others. for the most part, i have felt positively ugly, and this has coloured my interactions with those around me, as i have approached these interactions feeling immediately inadequate through the simple fact of my ugliness in a world obsessed with beauty.

my outer ugliness has always, in my mind, shown to the outside world my inner corruption, the essential toxicity of my inner, unseen self.

i guess i always held onto a belief that life would be different if i was just beautiful.

the year i turned 30 was the year in which i, for the first time, became aware of my body as something other than a window into the imperfect morass of my essential being - a vehicle which consistently disappointed me by it's flaws and limitations.

at this stage in my life, i was studying full time at uni 40 minutes from home, working an early morning cleaning job before uni three times a week, and a mid-week cafe shift as well.  at home were my two children, partner, acres and mortgage.

at some point i realised that my life was very cereberal, and i needed to somehow balance that out in the physical.  i attended a local martial arts class run by two young guys who i studied with along the way. that class fizzled out within a matter of months, but by that stage i had developed the ability to find my centre, and hold it strong, throughout my daily life.  i was amazed at my own ability to 'centre' and was the first time i had seen and appreciated a tangible linkage to the body/mind/spirit connection.

i started doing circus training with some good friends and this became valuable time out for me, when my sole focus could be me, and my strengths and weaknesses, my own abilities and limitations, allowing my own aspirations for strength, flexibility and physical control to bubble to the surface for examination, analysis and nourishment.  pretty soon i was reliant on this physical outlet as a regular part of my life.

this sort of training opened me up to kickboxing class with a bunch of mums of young kids, on a friday evening, after which we would all share a drink and a laugh at the pub - our drinking and fighting night we called it.  so this kind of physical commitment really also served a purpose of  building social networks and supports as well.

with notable breaks in routine over the last decade, i have maintained this commitment to my physical being and have always since valued having some physical outlet for my energy, lest i burn it all up in my head. sometimes, i find this outlet in dancing, also and wood chopping and yard work.

so, i have pursued a physical regime as a harmoniser for my mental well being.  i have used physical training as a means to the mental and emotional strength to which i aspire. lessons learnt whilst chopping firewood, moving into a yoga pose, straining for a chin up, whirling like a dervish, or battling lantana, have, for me served a deeper purpose as i strive to understand the strengths and boundaries of my mental and emotional self.

as i have actively pursued embodiment, i have strengthened the connections between myself and those beings around me - my friends and family, my workmates, the trees in my forest, the frangipani in bloom, my community and the broader environment and society beyond.  it is through emobodiment which i understand connectivity, the complexity of the weaving which holds this all together, and each and every one of us at the centre of a vast multi dimensional network, the depth and breadth of which is beyond our understanding.

i have noticed and enjoyed the outward changes occurring within my physical self.  somewhere along the way there i must have become attractive to observers, because people do make comments to me about my physicality.  and when that happens i find myself scoffing, feeling a bit annoyed, because i know that what i look like to you tells you nothing about the important bits of my self.  if i happen to fill out a particular dress or pair of pants nicely, is so beside the point.

what i am valuing about myself in this body is not how it looks, but how it holds me all together and allows me to interact with my space through the medium of my physical senses as well as the psychic ones....i am valuing the unique capacity i have for moving through this world of sights, sounds, smells and caresses, in this physical vehicle of mine. what it looks like to others is ultimately immaterial.....


the fundamental problem at the core of the beauty myth is this. beauty is not in the eye of the beholder.  beauty resides in the heart of the beholder. beauty is a feeling, not a visual which we perceive with our eyes. so while we all strive to achieve the body beautiful and sculpt, wax and groom ourselves for the eyes of others, it is all pointless.  beauty is as beauty does and it is our actions which reveal our inner selves to the world. it is our responses to the people and environment in which we work and play which reveal our worth.

moments of moment

I’m looking for the moments…I’m seeking the space within the space – the space where change happens. I’m searching out the minutiae, examining it and deciding whether to keep it, or remodel it or throw it away entirely.

An example:

Tonight as I washed my face clean of the day,  I began to feel anxious and wasteful at letting the water run whilst I waited for it to warm up. My inner voices chided me for the power consumption from running the pump, and the precious water just running down the drain. I considered putting a plug in for the washing up, but reasoned that I didn’t want to wash up in my dirty face water.

In that small moment of angst I glimpsed an option.  I glimpsed an opportunity to enjoy abundance. It has rained for about  10 out of the last 14 days. Additionally, the rain came each day in the late afternoon, after the spring sunshine had juiced up the batteries and we had an excess of power. So, as so rarely happens, I had plenty of power, plenty of water and plenty of gas (as I had just gotten a full tank).

What better time than now to enjoy abundance?

So I gave myself over to the waste.

I was wanton in that water. I allowed it to sluice deliciously over my hand on its journey to warmth, and run on down that drain taking the crumbs from the sink with it.  As I splashed my face in the hot water, feeling its warmth on my hands and face, I was so grateful.

Later on, I wanted to go outside for a cigarette. I listened for a moment to the chorus of voices in my head demanding to know whether this action would serve my greater good before conceding that no, it would not serve me.  Rather than go anyway, conscious of the fact that I was actively doing myself a disservice, listening to those voices and feeling crap about myself, I figured that maybe, whilst doing so, it was also possible to do something which would serve my greater good.

I walked out into the night, felt the chill of a clear night on my bare skin. I listened for a while to the frogs calling to each other. I began to discern the different frogs, their voices coming from different locations. I started to differentiate the different calls, their frequency and the answering calls from across the creek.

Looking into the sky I noticed the beautiful balance of a clear and high sky studded with stars, and the wisps of cloud streaking across it.  the silhouette of trees and mountain against an inky sky, the first blushes of moonlight in the sky above Blue Knob, and the frogs calling through the crisp and bracing air – what a wonderful antidote to the soul destroying habit of inhaling tobacco…..

Musing, listening, smoking, I watch as the first brushstrokes of the rising moon are painted above the mountain. The light of the still hidden moon is reflected back from the bottom of the clouds sitting in the sky above it, painting them golden, reflective.  As I watch it seems the mountains and trees below get darker in comparison to the lightness which is seeping into the sky, from a focal point somewhere behind the mountain which sits front and centre from my vantage point on my verandah.

It feels as though I am pulling the moon, cajoling it, willing it to rise.  I can’t help the smile playing about my lips as I feel her coming. She’s cheeky when she does arrive, showing herself first as a torchlight or a flare, suddenly illuminating the space between 2 trees at the very top of the ridge. This could just be a house light, or oncoming beams of headlights, but that there is no house, no road up there.

Before my eyes the moon ascends the far side of the mountain and drags herself into the waiting sky before announcing herself – luminescent, glowing, so smugly self assured and so damned perfect.

I smile, and I feel the night smiling back at me.

red wine and heartache

there have been a handful of times in my life where i have been confronted with the fact that i have inflicted unspeakable pain upon someone i love and that i have done so completely unknowingly.....today was one of those times.

i am sitting in the cozy surrounds of my loungeroom, as a fierce wind blows outside - i hear it in the treetops and it brushes my skin through the windows - drinking red wine and running an endless loop in my head, alternating between anger and self justification and just a deep and profound grief.

i'm confronted - again - that sometimes it is all we can do to love from afar.

it pains me that love transmutes into something nasty and putrid and painful.

today marked a fundamental shift in my relationship with my oldest and perhaps dearest friend, and i am grasping onto a hope that she is not lost to me forever. let this just be a bend in the road, not an
irretrievable loss.

but i have to wonder why this is. this has happened to me before - when a dear loved one has angrily cut me loose due to an entrenched feeling of subjugation.  i'm forced to ponder - do i really misuse my power to such a degree as to mortally wound those i hold dear????? what is it in my character, what can i do differently to avoid coming to this place again????

and it makes me feel wary of close relationship. if i am so fundamentally flawed (i mean, it really is a fundamental problem if i can't even see where i am going wrong) then i know i will only ultimately hurt those to whom i feel close, somehow.....in a way i don't quite understand....

god....i'm going round and round in circles on this....

....from the mouths of babes....

discussing feelings with my 7 year old.
talking about anger, sadness, tiredness, frustration - trying to tease out one from the other; attempting to identify what we are actually feeling at any given time.
she's a child of quite startling depth. faced with the theory that we can sit in many different emotions at any given moment, she struggled through genuine tears of grief to tell me that she has a part of her which is very, very sad, and which will always be there, always be a part of her.  'we share that sadness, you and me' she said.

talking about redemption with my 7 year old.
talking about choosing our own identity, working with the idea that we all of us have challenges, a drive to self improvement. identifying times when we each have felt truly happy, and seeing how feeling happy is tied up in also feeling generous, giving, loving, compassionate, empathetic....

together, we are accepting the notion that we can choose our own perception, from moment to moment - that each moment is a gift, to be evaluated and explored, choices made about how we respond, and how our responses will shape the next moment, and the next.

these children of mine truly drive me - sometimes, they drive me to distraction, others they drive me up the wall, often they drive me crazy and a few times even to the very edge of the abyss.....then there are the times where the place they drive me to is exactly the place i need to be, if only i had seen it for myself.

it used to really irk me that i was living a cliche - parenting the inner child whilst parenting my children; seeing in my child's eyes my younger self, crying out for guidance, acceptance, nurturing, unconditional love. i see it now as a symbiosis - as i teach them i learn, as they learn they teach me, we learn together as we teach each other.

and, in this moment, i am grateful. grateful that a bedtime conversation takes me out of my own feelings of tension and resentment, and that through my child's struggles we both learn to be gentle, on ourselves, and on each other.

more friday night musings.....

Musing on the nature of connection tonight. The inevitability of it. the absolute randomness of it. sometimes there’s just no rhyme or reason to it. there are times when a connection, when it reveals itself, seems pure lunacy. at others, a connection is so unarguably ‘right’ and not even requiring of scrutiny.

We connect with people on so many levels – some more subtle, some more overt, than others. Sometimes we even connect with people on levels we didn’t know we had – heights AND depths!

Some connections can just occupy a corner of our minds, our lives, a certain little window of illumination which is only apparent at a certain time and place in space.  Others burn so brightly that all the details are seared away in the luminescence and we are consumed.  Sometimes we give in willingly to the resonance, and at others we fight it…..

 

And also mulling over the idea of openness.  And how it is we open. There are people who rip us open, snatching the sensitivity from us, demanding truth and openheartedness and not taking no for an answer.

Those who no amount of psychic protection will keep out.

Those who demand to be seen. Felt.

Then those who hover,  much like a hummingbird, never quite alighting yet constantly darting in, at once relentless as a mosquito scenting blood, yet also as alluring as a sunbeam. An emanation of warmth which calls forth a welcome response, an answering radiance drawn from the very depths of one’s being.

Those with whom we bask in a metaphysical sunlight.

Those with whom we may never speak, yet know completely.

The different natures of openness, too, consumes me.  At times I’m resistant, not wanting to acknowledge connection, at a particular time, or in a particular place, or with a particular person (and sometimes all three at once!)

And yet with others I feel myself unfolding, unfurling, revealing in a most exquisite way.

And the truth of it all is this – it is all completely random. I cannot intellectualise my connections. I cannot reason them into some kind of pleasing order. I can neither justify nor deny my resonance with another.

It just simply IS.

a solstice gift - a ray of light on this longest of nights.....

i met a very lovely young man tonight....by young, i mean younger than me! I think he was aged maybe 30.  I was at a solstice party at a friend's house about an hour away from here. it was a reasonably restrained affair - vegetarian bbq and sangria, with the added indulgence of a session in their steam room.  my kids opted to contribute chocolate fondue strawberries and fresh whipped cream to the feast, which was a welcomed and exciting addition to the festivities.

the young man in question was visiting the area and i'm not quite sure of the connection but think he was a friend of my friend's housemate...

he presented as a quite friendly, open and gentle individual with interests in music, yoga, drawing, and a carpenter by trade. he also happens to have an extremely rare and aggressive cancer which is growing around his spinal cord, is resistant to conventional therapies, and causes him to suffer from chronic and often unbearable pain.

it was bizarre and unusual to meet someone in this position.  as he spoke to me about his condition it was like I was having a conversation with myself......he described his illness as one which is ridiculously rare.  apparently it is generally unheard of in one of his age - usually afflicting young children.  his presentation is not as would be expected or has been observed before.  the similarities to my daughter's condition were striking.

I cannot adequately convey the gentleness, and joy of this individual.  he confessed that, now two years since first diagnosis, it is not something he really thinks about very often.  with the failure of conventional treatments, and with the tumour remaining in his body and causing him extreme pain, he has embraced his own intuitive style of therapy.  he uses regular yoga, and breathing techniques to help him manage the pain.  he uses foods as medicine, and maintains a conscious and constant awareness of his body's needs from moment to moment.

he positively radiated light as he spoke to me of the wonderful people he has met along the way and the lessons he has been learning, courtesy of this scourge. this was a young man in love with life; who accepted the rapid change in his life direction, and totally embraced a new way of being.

it was a relatively brief meeting, but an inspiring interaction, which reminded me of a few things which I tend to forget in this whirlwind of my life.....

picture imperfect

Friday, 14th of June -

a good day
 in fact a day of good:-
   good news
    good fortune
     good company
      good weather
       good ideas


the list is seemingly endless...

there I was sitting on a low wooden, slightly damp bench seat against the wire fence of my daughters' school. it was mid afternoon, school was finished. about fifteen children remained in the playground, waiting for the last bus, or parents who were chatting, or running late.  leaning back against the hedge which grows from behind the fence, the chill winter breeze kissing my cheeks and nose as I snuggle down into the scarf around my neck.

I watch my youngest daughter as she idly swings herself in circles around the basketball hoop, her golden hair plastered across her face, her mouth moving silently in some song or game or fancy - no doubt involving fairies and gnomes. a moment later she is off, absorbed into a game of chasing involving two or three other little girls of varying age, size and temperament.

my middle girl is holding court against five or six boys and girls, on the handball court. they good naturedly jostle each other for supremacy, arguing about rules and hierarchies.  dressed as they mostly are in blues, greens and purples, some barefoot and bare armed, others buttoned up in bright, bold coats or swathed in rich cosy woollen creations; they are beautiful, tousled, grinning children....

such a joy to behold.

as I look around at my surroundings, breathing in the colours of the children's clothing, the sunlight at the very tops of the gum trees, achingly cloudless blue sky, the mud and flowers and cubby house and buildings; as I close my eyes and listen to the singing, protesting, laughing, chanting children, the murmur of school gate catch ups among parents, the whistling of the wind through the leaves....I smile to myself and marvel....I am filled with gratitude.


good news today came in the form of a good scan result for my eldest daughter.  it followed a time of worry, and at times crippling anxiety resulting from a not so good scan result about two weeks ago. anyway, today for us felt like a reprieve. this positive result means my daughter can confidently take a month or so away from treatment for her cancer - the first break she's really had for about six months.  she has her first ever university exam early next week, and then is travelling overseas with her friends on the weekend. she was so relieved today and said she can finally allow herself to be excited about going away, without the background anxiety about being unwell.  as we walked through the hospital after seeing the oncologist, I couldn't resist doing a little jig and a jump in the air. I would have done a cartwheel if there was not a big ridiculous tiled column in the middle of the walkway.  we walked out of the controlled air of the hospital into a winter morning positively bathed in golden sunlight.  we giggled giddily as we remembered the cheeky, dodgy park i'd done in a doctor's carpark as we were running late and anxious to get to the appointment.

good fortune favoured me when I bought my regular friday raffle ticket on the street in nimbin later in the morning.  of course I got stuck doing odds and ends in the shop and was still around when the raffle was drawn and I won! $100!! again, I stood in the sun, grinning like an idiot, as I was handed a crisp, and unexpected greenback.

I've had a good idea today, but in it's execution, I wonder if it really was such a good idea, and I guess only time will tell....I bought some blackboard paint. I had a pantry built in my kitchen about a year ago and we suddenly had a big, unadorned, untreated fibreboard door, right there, in our space.  it's been yawning at me this whole time, begging me to paint it.  I've always been a fan of the public blackboard space, and have seen occasional masterpieces appear on them.  the last time I did this I painted a random smear on the wall above my fridge (which is one of those intense looking chest style ones which run on 12volt), in our old house on the mountain. that chalkboard was both a blessing and a curse at times! in that house we also had a big round chalkboard on the back of a huge wardrobe which formed the partition which allowed me a bedroom.  both of these boards attracted doodles, poems, flowers, stars and love hearts, whilst periodically annoying me with their dust and disorder....

anyway, I just went to paint another random smear, but the space is so much bigger and I couldn't make it look right, so I just painted the whole thing! and now I have this HUGE, BLACK panel in my kitchen, which impacts on the entire living space with it's....blackness....and now the damn thing is still yawning at me!! tomorrow i'll get some beautiful bright chalks and we can overwhelm that blackness with shopping lists and birthday wishes and phone messages and rainbows.

as I waited for the first coat of paint to dry I made myself a pot of tea.  it was a truly inspired pot of tea.  all I put in there was nettle and rose petals.  the result is lovely, clean and slightly sweet....so warm and fragrant.  i'm so inspired by that pot of tea that i'm thinking about buying a camera, so I can photograph the steam rising up off the rose petals, with their differing shades of pink and magenta, against the wholesome dark green of the nettles, nestling there in the mesh basket surrounded by butterflies on my ceramic tea pot.

and lest I paint too beautiful a picture of my immediacy let me tell you about the mouse which just ran across the arm of the couch where i'm sitting. and the other one which keeps running back and forth along the wall behind the fireplace. and the one I can hear in the kitchen, though whenever I go over there I can't find it. I caught two last night, in a live trap baited with peanut butter.  I released them under a tree when I dropped my kids off at the bus this morning.  I must say I felt a bit clever this morning, but now as the nightly rodent circus resumes in my living space I concede defeat, again, as I do every night.....

me and centrelink go way back

so, I quit my job yesterday.

it was actually a little more complex than that might seem; but conversely so very simple....
working for myself, as I do, it's not so much a 'job' I have left.  I have simply relieved myself of the two days work per week I have been  doing in my shop, which I share with two very dear, and very accommodating friends. I have stepped out of the role of shopgirl, which I've filled for the last year and a bit. though, given that it's still a new business, it's not a role which has generated any income for me throughout that time, either. so I haven't actually given up any money by leaving my job.

I have stepped away from any managerial role for the foreseeable future as well. my business partners have so graciously, and gracefully, allowed me the space to put down that weight, so I may work on redistributing, and carrying my other weights with more care and attention....now that's heart centred business in action! thankyou girls.....x

so I have essentially walked away from one of my babies. I love that shop. I love what we three co-created. it's beautiful. and it has served such wonderful purpose for me over the last little while. we envisaged a hub - a place where we could meet friends and strangers, and slow down a minute, sip tea and just chat....the outcome is that i have found such a strong and diverse and nourishing network existing through that space......ah.....I will miss working in town...

ultimately, though, I found that I have been trying to juggle too many balls, and for too long. I have used up all of my reserves of strength and energy. when I  try to dispassionately list my priorities at this time in my life, my children, all three of them, crowd up at the top of the ladder and there is simply no ROOM for anything extraneous. and i think that when something loved becomes a burden, instead of a joyful expression of self, it is time to put that load down and have a rest, before regrouping and carrying on with the rest of it.

i will really miss working regularly, though.

i haven't worked full time for about eighteen years, which is probably why i enjoy working when i do.  in that time, I have worked and parented, studied and parented, worked, while studying and parenting, and just plain parented....but I have always enjoyed the social aspect of working in nimbin. there's a lot of therapy that goes on in our streets - every moment of every day!

right now, though, i'm chasing a different kind of therapy. one that involves an axe, and rounds of wood. also it involves fireside chats with glasses of red wine in hand; bedtime stories with hot water bottles and rosy cheeked children; bad tv in bed with chocolate; soccer games and the skatepark; walks in the forest; aimless weeding; the chatter that only happens whilst collecting kindling with my children; cheeky daytime naps; the brief schoolyard connections at pick up time.....who knows? maybe even baking....oh, and endless cups of tea!

day four blues

it's day four, and it's a grind.
I think my limit for 24/7 caring is about three and a half days. is it wrong of me to be feeling so resentful?

after a couple of days of this I lose the power of speech, and if I do happen to answer the phone, or be required to converse - at school, or the supermarket - i'm unable.

it's impossible to not be forward planning - or forward stressing in many cases.

the thing is, we know this illness. this is chemo sick. we have run the course of the fatigue, dizziness, malaise, nausea, wandering pains, bruising, loss of spirit. we have weathered this storm and seen that it ends.

but what of later? what of the OTHER illness? how will I possibly sustain this role when it gets REALLY bad???

I've organised a babysitter/companion for a couple of hours tomorrow night, so I can have a break.  and grateful for the prospect, too.  it's good that there is enough predictability in this chemo regime that I can safely pop out for a few hours.

it's just so relentless. my other children go to school, and to sleep, and I get a break from them. my eldest dozes a bit during the day, and sleeps for about eight hours at night (though i'm aware of every thump and cough). for every minute that she is awake, I am on call. glasses of water, cups of tea, fresh fruit, cooked meals, remaking the bed, opening the window, taking away dirty tissues and dishes, massaging her feet, washing her clothes, keeping hot water bottles hot, dashing to town for supplies of her latest craving ----- the list is ENDLESS. I groaned a couple of months ago when her grandad sent her home with a doorbell to use in emergencies (the button is in her room and the ringer is in mine). it broke fairly soon after, but I've been so anxious some nights that I've thought I really need to replace it....

just when I think i'm getting my domestic chores in order, there's another demand to be met.  after days and nights of it I am so worn out and my patience is wearing thin.

but there is just nowhere to put these feelings. i'm not proud of feeling this resentment.  many's the time I've thought i'd do ANYTHING for this child, and now here's my chance. I have joked with her over many years, whenever she accused me of some awful deed in our past I would retort with : 'yeah, well you stole my youth so I think we might be nearly even'.  but who am I kidding? I have given this child my life. my entire, independent, adult life has been for and about this child. the others, too, of course, but ultimately her, because she has been with me every step of the way. she is my constant in a changing world. turning 40 this year I will have lived half of  my life as a mother.

even with the other two, who need me more than their big sister ever has, I project into a future without her and I feel rudderless. she's the one who has kept me on the straight and narrow. the one who demanded a certain way of life, certain luxuries, when I would have turned my back on all of society and it's conventions.

........

the real problem is that I am stuck at home, my only company an acutely ill teenager. i'm having all of these thoughts in my head and there's nowhere for them to go. I cannot burden her with them. no one comes over and I only leave for the briefest of mad dashes into town for supplies, or for the school run. I am alone with my thoughts FAR TOO MUCH......

I have just this very moment hit upon a new and fundamental understanding of my self.
deep within my psyche I believe that desire is a negative experience - my every experience of desire comes hand in hand with shame of some description. of all the things which I desire on a frequent basis - chocolate and red wine in my mouth; good and uncomplicated sex; chemical oblivion - they all seem somewhat.....inappropriate....there's this little voice in my mind, calling me names, labelling me for these thoughts of desire - greedy, hypocritical, slutty.

is it really so bad to desire, to want? I don't know....is this voice my catholic 'conscience', instilled in me from a very early age; a moral compass bestowed upon me by the one and only true God?

the Buddhists have something to say about desire, too, don't they? my understanding of Buddhism suggests that we are meant to somehow transcend desire.

mindfulness practice would have me notice the desire and then watch as it passes away....I must say, there are times when i'm quite happy to simply inhabit the space of desire, to feel how it feels within me physically - where I feel it, how it manifests in my body....

but then I also think, why am I here if not to have the fullest experience possible? I want to taste all the possible scenarios of human expression. I don't want to keep having the same feelings, thoughts and experiences, every day for my entire life. I want my experience to change, to constantly move and weave through all possible vistas.

and isn't desire just as instructive an emotion as, say, empathy? or joy? or even sadness? surely it's important that we have them all...

I've long ago accepted that I am, in fact, multi-faceted. I am a multidimensional being.

sometimes I hate. sometimes I envy. there are times when I have incredibly uncharitable thoughts about others. sometimes I loathe myself. at other times I love myself. sometimes I eat chips with flavouring on them. every now and then I actually see little fairies in the forest. sometimes I cry with wonder at the beauty of nature manifest in my children. I actually really like drinking herbal tea. I am happiest when I am dancing. and sometimes I want things that I cannot have.

but I refuse to accept that desire makes me a bad person. in the scheme of things, if my children are surviving this intense period of their lives, if my businesses are both thriving, my house is relatively clean and mostly warm, we have good food in our bellies and the washing up is done why can't I roll up a joint, pour a glass of red wine, break up some deliciously bitter dark chocolate and fantasise about good and uncomplicated sex??!!

It all seems ridiculous when I give it a bit of examination. it doesn't stand up to scrutiny.  how could desire be 'bad'?.......


so, there you have it. I hereby shake of the mantle of shame and accept my desires as blessings and as integral pieces of the whole.

thankyou for sharing this journey of self discovery with me......

.....just throwing it out into the ether....

 

in the end, which is more important - the head or the heart?

ruminations on the nature of struggling

today i confronted the fact that i am struggling. that i struggle......today i struggled.

the realisation came as i was driving my car back home, from a lightening trip into town for supplies and, i hoped, a momentary escape from a day which was really taxing my reserves of patience and fortitude.

i was hurrying to get back, swinging the car round the potholes and corners whilst simultaneously massaging my neck and shoulder ( i pulled a muscle - in the shower!), and thinking about what was waiting for me at home.....my youngest has a chest and a head FULL of snot, she is coughing and spluttering, her cheeks are aflame; she's a veritable germ factory.  my middle girl has been flushed, tired and tetchy since coming home from a brief trip away with friends, two days ago.  both small girls suffered a mysterious, short lived vomitting episode yesterday afternoon.

my eldest had chemo on thursday, and these days following treatment leave her severely immunocompromised.  she is perfect prey for any stray pathogen around, and there is a steady supply at my house at the moment.

the last couple of days have been incredibly wearing.  i have worried, about each child individually in her own personal illness.  i have worried about my own capacity to care for each of them, in their own individual way of needing me.  i have worried terribly about having them all here together, one big toxic milieu....but despite working through myriad scenarios in my mind, i couldn't see a way that i could nurture and nourish each and every one of them.....

......and then i put my neck out!!!

i reached the point this afternoon of needing supplies from town, and also needing to escape, however briefly, and i left the two youngest on the couch watching a movie, and the eldest snacking in the kitchen, and fled to the streets of nimbin.

while i did get coffee (hooray!) it was ultimately a very unfulfilling escape, as it was extremely short (i WORRIED about them) and i realised as soon as i got there that i was unfit for human consumption, and then proceeded to see about 15 people who could, and would, have got me out of my funk if only i could give them the time to do it.....

and as i drove home, i allowed myself the thought that this is struggling....

sometimes, the only thing which gets you through is the knowledge that that slowly grinding wheel of time will inevitably drag itself forward, and us along with it, and.......THIS TOO SHALL PASS.

i am grateful to my good friend and sister, who took the girls for a few hours later in the afternoon, and gave me some breathing space, some catch up time.....giving me an extra little shot of stamina which allowed me to build a fire for my family, cook up a delicious and nutritious meal which was enjoyed by all, and to read an extra long instalment of THE NEVER ENDING STORY by the fire before bed.

as i was blessed by another good friend and neighbour who visited yesterday evening - despite the vomit - to play with my kids while i cooked, and who later gave me a foot rub by the fire.

and, again, there are the gems amongst the shit...glimmering away slyly....waiting patiently to be noticed....

...hmmmm....seems this blog is turning into an oprah winfrey style gratitude journal.........!

grief trumps hope

well folks, i have a feeling its going to get a little raw and emotional on here tonight, so if you don't think you're up for that, tune out now.

on april 16th last year, i learned of the death of michael, my one big love, the father of my two little girls.  i last spoke to michael on the 11th, and until tonight, i believed that that was the night he died.

tonight, this evening, i was overcome by a blanketing, all encompassing storm of grief....a wrenching sadness which twisted my insides, stole my breath, consumed me....and i knew that this was michael's pain i was experiencing.

absenting myself mid dinner prep, i fled to the darkness and solitude of my bedroom, and gave myself over to the physical sensations of sadness and reflective pain as i pictured each of my loved ones and relived their shock and grief and absolute DISBELIEF of the reality of a world without michael.

i so nearly suffocated on the collective secretions of my nose, eyes and lungs as i struggled to breath through it. i'm already producing such copious amounts of snot due to having this flu.......anyway, i'm left feeling really cold and spent. i'd love a fire to curl up by.....

it's not a wager i will ever collect on, but i would put money on the date and time of michael's death now.



this has been a day of very present emotions, for more reasons than one.

today we learned that the recent chemotherapy regime has been effective in terms of controlling the growth of cancers in my daughter's lungs.  the main tumour has shrunk significantly, and some smaller lesions appear to have died altogether.....curiously, did you know that a lung can remain healthy and functional, despite the presence of 'holes' in it? i learned that today.....

the current conventional wisdom is to continue with this line of intervention for a bit longer, and we are also exploring some other options alongside the conventional chemotherapy.

so anyway that result seems to be a bit of a reprieve, which is good.....

my daughter seems strong and consistently positive regarding both her present, and her future.

i look forward to a moment of fully appreciating that reprieve at some point when i'm not aching from this current grief.....

spirals & anniversaries

here it comes, descending.
i feel it settling upon me, weighting my limbs, my neck, my head.
what is it i feel alighting?

is it a bodily weariness?
does it come from days and days of illness, perhaps? followed by a looooong, involving day of children, doctors, driving, people, children....maybe i am still sick and this is what i'm feeling.

or could it be that ugly black cloud of grief? all of a sudden i'm overcome with memories, reliving this time last year in my life.  as the anniversary of michael's passing approaches - mere days away - i'm struck by the tendency of my idle thoughts turning to him, turning back to the raw aching confusion of the days around his death.
it is this then that assails me this night, making me restless, thoughtful.....agitated?
am i living the cliche of anniversary-related anxiety??!! oh god, i'd like to be a little more original....

it does seem unavoidable to feel him around me at the moment.  i am calling up joyful memories of his time with his kids. i hold dear a mental image of a photograph of michael walking up the track at tuntable with mally on his shoulders and arky walking by his side. in my mental image of this picture, michael's head is inclined downwards, presumably totally engaged with a prattling arky, whose focus is upward, toward her dad. mally, on high, is holding her tangled golden hair out of her eyes with one of her hands, and probably butting in on arky's story to tell HER VERSION.....it is my misfortune that i wasn't there at the time the photo was taken....i was, however, there on many other occassions of harmony and shared delight, and i call these up....to lighten the load a little.

as i sit and ponder on my perch on the verandah railing, observing the stars through a light layer of fog, feeling the late autumn chill on my cheeks, my neck, it occurs to me: it just may be the mist settling upon the crisp, cool night outside, it just may be it's winter's approach which has me feeling this heaviness.

ha! i think some of this steiner stuff is creeping in on me! sometime after michael died last year, i attended a winter festival at my daughters' school.  it's probably the fourth or fifth or even sixth of these which i've attended, but it was the first at which i really felt and understood the symbolism of walking a spiral in darkness, spiralling inward toward a little light from a candle in the centre, whereupon one receives the light in one's own candle, to carry outward into the darkness.

that time in my life was so unbearably, so unutterably DARK and yet i understood, i felt empowered being able to walk INTO the darkness, confidently and find that tiny light, and walk with it, take it with me, and take along with me it's warmth.

i found tremendous comfort from that ritual, from that symbolism.

very soon i must channel these feelings, this energy.....winter's cold will impel me to become active, to stay warm, to keep the home fires stoked....and this will be my little offering of warmth and nurturing in an otherwise cold and frosty world....for now i'll wear a scarf and cradle a cup of steaming tea....

well, i'm confined to bed for the third day in a row. i realise i don't have much patience for being sick. it's only the flu, but it's really gotten me down. my head is stuffy and producing copious amounts of mucous, my chest hurts every time i cough, my joints are achy, my neck is stiff and sore.

i guess it's an opportunity to test out all the remedies i recommend to others in this situation, and i'm grateful i have all of these at my fingertips.

i just don't like it, though. i'm bored senseless....i've run out of books to read, and have resorted to one from my ten year old daughter's collection....and there's only so much iview one can watch.  i appreciate what a stretch it is for my eldest to stay positive when she has to lie in bed for five or six days at a time, feeling weak and nauseous from the chemo.  i'm always around for company, but really, what 18 year old wants to spend all day and all night hanging out with her mother??!!

she has risen to the occassion, however, and has been preparing food, washing up and generally giving the impression that she cares about the fact that i am feeling so unwell. bless her!

i have to say, this chemo thing has been more bearable than i expected, for all of us. while she has lost her hair, and feels pretty crap for the week or so after her chemo, she has managed to keep her weight fairly stable; she's eating pretty well - though she does have some weird pregnancy-like aversions and food desires!; her spirits remain good. i was worried about her having low immunity, and living in the middle of the forest with two younger siblings, bringing all sorts of snot and vomit home from school, but this has been okay, too.

she is going to uni one day per week in brisbane, driving herself up and back in her NEW car (!) but has had to miss one week in three due to chemo side effects.  the folk at UQ have been wonderful to her and are really making it as easy and accessible as possible for her.

so, she has taken it all in her ever graceful stride.  life goes on, and we just adapt.  i've been able to work two weeks out of three.  this has been really important for me, to keep some kind of social aspect in my life, and i really appreciate that my business partners have made it possible for me to dip in and out as life circumstances permit. the kids have had uninterrupted schooling and continue with music lessons, gym classes and soccer training.

so, as always, it seems the anticipation is so much worse than the reality.  i don't know why i'm surprised, as it's proven time and time again.  who was it who said 'all we have to fear is fear itself'?  no doubt a very wise woman.....

the yin and the yang of things

it's a funny thing, that this blog space taunts me sometimes. knowing it is a commitment i have made to chronicling this time in my life, and the life of my family, gives it a gravitas - it demands prioritising, at the same time as every other damn thing in my life demands prioritizing.

i get my head into a tizz sometimes, trying to successfully weave together the many threads of my life, into a coherent whole, dealing with snarls and breakages as they occur, holding it all together in crude knots at times....

so there have been many times over the last three weeks or so, when i have felt into a small moment in time, and wanted to document it in this blog, but lacked the necessary energy to sit down at the computer, compose my thoughts, and share them. it seems somehow deceitful to not check in, knowing that the last blog was written at a time of such weariness, such deep exhaustion, and that this blog is stuck at that moment in time, whereas my life, my attitudes and daily experiences are ever changing.  i have lived a thousand small lifetimes since the last blog post....

there were many times i wished to make account of the slowly grinding wheel of time, acknowledge it's movement through space, it's progress through my stumbling blocks and flimsy defences, it's relentless movement forward....ever forward.

for i am forever moving forward. much as i sometimes want to freeze the moment.

i reached a milestone recently.  my eldest daughter turned 18, and i celebrated 18 years of motherhood. the party seems to go on, and on. we have celebrated in every conceivable fashion.  my life has been a whirl of friends, music, dance, laughter and reminiscence.  it has been really, really lovely, and i have felt so blessed to have this joy and warmth in my life, to be surrounded by loved ones, nurtured, celebrated, and really actively loved and loving in return.

the milestones keep appearing and receding behind us - finishing school, granting of a driver's licence, starting uni, turning 18, getting first car.......recurrence of cancer.....all of these things have happened within the space of only about three months. we are on a roller coaster.  as i witness my daughter's complete and unabashed joy at her new found independence, i also witness her hair falling out, moulting like a favourite dog. i bear witness as she shops for a wig, has her hair cut short for the first time in about 13 years, and then her unflappable acceptance of the head wrap - a fashion she has NEVER been a fan of.

this child is grace in action.

and again, in the midst of the gut wrenching sadness of the thing, i glimpse beauty.....

i had an epiphany one night, the details of which i won't bore you with, but the realisation was this:

we are never COMPLETELY devoid of darkness
we are never COMPLETELY devoid of light
the two coexist, always and forever

it gave me great relief at the time to understand that i can always choose to look for the light within the darkness, because it is surely there.......phew......IT IS ALWAYS THERE!

as we approach the second round of chemo, my anxiety has increased, my sleep has become disrupted, my mind is racing. every day i am striving to achieve more, to get more DONE, to fit more into each day, to make these moments, each and every one of them, LAST and contribute as much as possible to the journey, to the whole.

every little thing i do demands my focus, and i am drawn in, drawn down, drawn here, to this present moment, where i aspire to find the divine in every single thought, every encounter. to sift out the wisdom in each moment, to glimpse the light in the darkest of hours.

we die a thousand deaths each minute, and a thousand times we are born anew.

chemo - day one, ground zero

what an unbearably lonely place i find myself in.
any parent can easily imagine the abject heartbreak of having one's six year old offering comfort through her own tears.  there are no words to answer the question, when it comes - 'mummy, what's wrong?'.  i can't infect her with my own cynicism and misery, biting back the answer -'darling, what's right?'.

tonight, i couldn't breathe through my tears. i literally had a moment of suffocation, when i was totally unable to inhale.

and the worst part is this: we're only at day one of chemotherapy.  the hard stuff hasn't even kicked in yet.

i just feel so incredibly helpless.  the patient herself is unable or unwilling to articulate what is going on for her, how she's feeling, what she wants or needs.  so i'm reduced to the status of an observer, jumping to attention if she asks for a drink, or needs a window opened.

as the little girls fight over how many pieces of toast one should have with her soup, i want to scream - who cares about the fucking toast??!!! in fact, though i don't scream, i do shout; but i don't swear....

i'm struggling with how to articulate all of this emotion.  raised as i was by a woman incapable of sharing her emotions (i didn't even realise she HAD them!) this is an extremely uncomfortable reality for me.  if i share my fear with my kids, will they take it on? if i express my sadness, will they too become sad? can i possibly burden them with this?

and if i keep it all hidden, push it down inside until the dark, quiet, sleeping hours when no one can hear me - what am i teaching them? am i perpetuating this familial dysfunction, this generational inability to express, to share? am i cementing myself in their psyches as a cold, closed, unemotional, distant being.....?

and, lo, it's raining.....again!

it seems all the world is water. and here am i testing the theory of bouyancy........will i float? or will i sink, and drown in despair?

raining again....on the inside too.

I'm having an attack of the sads today.  feeling overwhelmed i guess, and pretty anxious about the first chemotherapy session on friday.  it feels like today is the last day i have to achieve anything, given that i work wednesday and thursday, and then it's all systems go come friday, when i jump back into carer mode and all else falls by the wayside.

opening the sad place inside of me gives rise to a multitude of sadnesses, small and big, and then all of a sudden i can't even articulate why i'm crying, because it's so many things.

i have so many things i want to get done today, but of course, i'm crying instead!!

we had a win today, with my daughter hearing news that she has won some big award for academic achievement in the face of adversity. she's very excited, and justifiably proud. it all seems a bit futile to me though, as it won't change anything for her. so we'll troop down to sydney later this month to collect the award, and then fly back and present her arm again at the chemo ward for another dose of toxicity which will hopefully stretch the elastic of time that little bit longer.

i am so not looking forward to this next phase. to watching my daughter wither, her hair fall out, her mouth fill with sores, and see her struggle to eat again.  i recall watching a friend go through this a few years ago, and how one day i looked at her, struggling with the chemo, and for the first time faced the thought that she could die.  the chemo seemed to be killing her.  i have so much fear of this dreaded regime. and it's not even as though it offers much hope. there is no prospect of this treatment being curative.  the proposed outcome is just that it will give her a bit longer on this mortal coil. and i guess that's why she's doing it.

i don't judge her decision, not one little bit, and i don't know what i would decide if the decision was mine. anyone out there who thinks they would do differently cannot truthfully say this unless they found themselves in exactly the same situation.

on another note, i am feeling incredible gratitude for this new recurrence. weird, i know. but hear me out.

my plans a few months ago were to help my daughter settle in her new life in brisbane, and then hit the road for a long expanse of nothingness, with my two little girls.  i was organising my life and my businesses to take some long overdue time out and go travelling with the kids. if all had gone according to plan i would be far, far away from nimbin right now, and my daughter would be starting uni, getting her licence and her first car and beginning her adult life.

it's only now that i am sharing these victories alongside her, that i realise how grateful i feel to be doing so.  had she stayed well and moved out, i would not be a part of this. i would not be promenading her through town telling all and sundry that she just got her licence. i would not see her face light up as she talks about uni, or agonises over which car to buy.  i would not have been celebrating her friends' birthdays with them.

this is such a special time in the life of any young adult, and society dictates a separation from parents at this time.  it is definitely her misfortune to be stuck dependant upon her mother again, but i am so happy to have this window into her life.

i think that's the only silver lining i can find at this time.....

a brief respite

we're having a good moment.
my daughter has recovered from her latest radiation session and is happily attempting to GAIN some weight....i have to say, coming as i do from 'big boned' stock, that's not a concept i've ever been familiar with!

it was a long haul, this last treatment. the focus of the radiation was on a large tumour, enmeshed in the main airways and blood supply for the left lung. as such, the radiation beams had to pass through her oesophegus to get to their target.  on the way through, they damaged the sensitive lining tissue of the oesophegus, causing a severe burn.  the effects of radiation therapy usually peak sometime after treatments has finished.  in this case, the patient felt the effects about four days after the end of treatment.  she went from eating normally one day, to totally unable to swallow the next.  even water burned.  she went two days without eating or drinking, before attempting to drink milk, mixed with a protein powder, taken through a straw.  this worked well for a few days. with her only sustenance coming from about 500ml of milk and fake protein per day, she required rapid rehydration, so we tripped off to nimbin hospital (i love the nurses there! they are so sensitive, and caring) to request a drip.

that's how we managed for about nine days, though for the final couple i don't think she was even getting milk down.....she was also using a lot of pain relief medication.  she was pretty miserable, poor love.  obviously weak, and just really worn out from pain and lack of ease.

anyway, she predicted the day she would recover from that, and recover she did! it was amazing! from one day to the next it just changed, and she ate three meals that first day.  she was funny....she ate such small portions but then complained of feeling like an elephant, she was so full.....!

anyway, so she's now in recovery mode, though suffering now from dental pain from her wisdom teeth (oh, boy, is she getting a fast track on wisdom!) - there really is no rest!

but her spirit is so much lighter.

she starts uni next week in brisbane. this is for her the fulfilment of a life long dream, and you can't wipe the smile off her face! she is only taking one unit, as she will begin chemotherapy soon, in lismore.  obviously, this will mean A LOT of travelling between brisbane, lismore and home, but i'm really glad for her to be studying at UQ, which has always been her dream, and also glad that she will be having this treatment in lismore, as she'll be here with me and i can be here for her in the fullest possible way.

so, this really is a good pause for us.....we are all home here together, we all have much to look forward to, we are all feeling reasonably robust, the littlies are back at school, and i even worked a few days in the last week!

i'm sensing that we will need to recognise these times of ease as they come along, and take the opportunity for 'normal' life where and when we find it.  i am aware there is a long road ahead and we will all need a lot of stamina to stay on top of things....just thank the goddess for these little moments of goodness!

drumming ethics 101

I learned something very profound tonight, and it is this:

As you cease to apologise for being who you are, so are you freed from the expectation for others to apologise for being themselves, too. It also works in reverse.

I am forever thankful for the streets of Nimbin, my playground in this sometimes harsh school of life.

I met these two guys on the street tonight, having their virgin Friday night drumming experience.  I chatted to them for a while.  I guess I helped them to feel comfortable, in a situation in which they 'didn't know how to act' (their words, not mine).

They told me that I was the first person to be nice to them, who didn't try to sell them drugs.  They thanked me, they were a bit overwhelming in their gratitude, actually!  And I wondered 'why would I bother to be other than open and welcoming to them?'

I realised that I simply don't have time to create discomfort for myself and others.  There is enough reason for discomfort imposed upon me by the universe, why would I consciously add to it, if I have a choice to do otherwise.

I then releived myself of the burden of needing to apologise for who I am.

Strangely, as I looked around, I realised that I was free to simply observe others being who they are, and not need them to be any different to how they are, either.

We really are all perfect.  Understanding the fact that we are so complex, and multifaceted (as is EVERYTHING in the universe!) allows me to accept my failings, my deficiencies, and, for this moment, I am releived of guilt.

aahhhh......I feel so light.

a balanced perspective

in order to maintain a sense of balance (i am a libran, after all) i feel the need to express some gratitude.

today, i arrived home after being away for an eight day stretch.  my house was so tidy. the washing up was done, the rubbish bin was empty, the recycling only had a  couple of bottles in it, the floors were swept and the glass doors shiny.  there was also no rotten food in the fridge.

i've had friends staying for the last month, and though i've barely seen them, they have left an indelible mark on this time of my life.  they have been incredibly sensitive to our needs, preparing food, playing and bushwalking and spending time with my little girls, maintaining my home, dancing and drinking red wine with me, and melting away into the night (to their caravan in the garden) when i needed to be alone. they have been my angels in the garden.

i haven't seen them since i've been home, but they ensured that my home was clean and welcoming for our return.

we went to dinner with friends tonight. the little girls had long hot baths, and we ate food prepared with love, to our dietary specifications. i was plied with red wine and sensitive conversation, and sent home with a bottle of wine and half a block of chocolate, and tired, bathed and well fed children.

whilst in brisbane meeting my daughter's immediate medical needs, i have been staying with her paternal grandparents.  they have opened their home to me and my family.  i am grateful for power and hot water on demand, comfortable beds aplenty, food i haven't had to cook or clean up after and the easy and generous provision of every facility i could require, including coffee machine, television and fridge which stays on 24 hours a day, regardless of the weather!

during the last couple of weeks, when i have felt overwhelmed by the demands of mothering my three children, all of whom are needy, and deserving of attention in their own ways, my younger two have been cared for, by relatives and friends alike.  i have been able to relax (just a little!) where they are concerned, knowing that they are being loved and appreciated and well cared for - by someone other than me - and that i can focus my energies and emotions upon the squeakiest wheel of the lot.  i feel really blessed that my kids have so many caring and functional adults in their lives, and are not entirely dependant on me for their physical, emotional and spiritual health.

i am living a sometimes unendurable nightmare, but throughout it all i am held, supported and cared for, and for this i am truly grateful.

ooohhhh.....i'm a wicked, wicked girl. how else to explain this lack of rest? this week i went the longest i've gone without sleep for quite some time - and without the aid of stimulants any stronger than caffeinne. by the fortieth hour of sleep deprivation, i was completely incapable of stringing words together in a coherent fashion. i think the only thing which stopped me napping at the wheel was the horrendous traffic on the drive across the city, back to our temporary digs. 
that was last night, following a hell night and day in the hospital watching my beautiful girl coughing fresh, bright blood into tissues, and submitting to whatever was thrown at her in the name of healthcare.

people, GET HEALTH INSURANCE, if it's at all possible for you. and also, don't ever undervalue the role of nurses in the health system. they are the ones who really care for you and deserve much better wages and conditions than they currently enjoy.

finding yourself at the mercy of the public health system is no laughing matter.  this week i have felt completely impotent, helpless, and very, very angry.  there is a radiation oncologist registrar out there who is lucky to be alive tonight, given the pure, unadulterated rage she inspired in me with her total lack of respect and sensitivity. thankfully, they're not all like her, and we have also encountered some really lovely, caring and empathetic individuals who have eased this journey just a little (most of them nurses!!! i think i'm gonna start campaigning for wage increases!!)

but the real issue is the SYSTEM.  in two days, we have been seen by four different radiation oncologists, three different respiratory specialists and three emergency doctors.  we have waited TWELVE HOURS in the emergency room, with no intervention, only to be berated like children over the urgency of the situation, and told we can't go home because it's too far from medical assistance.  TWELVE hours, and they considered the situation URGENT. it's absolutely, totally fucking ludicrous.

i'm struggling with a lot of anger, and most of the tears i'm crying are angry tears.  i'm so frustrated by my inability to be heard, to stand up for my daughter in the face of this vast machine which shunts her here, then over there and back again without so much as a please.  no one asks for permission.  not once has one of these 'specialists' given us options to choose from.  they present one course of action, only, and are generally quite defensive when asked to justify this 'recommendation'.

i've come to the conclusion that this whole exercise is really a lot like giving birth.  we have medicalised death in the same way as we have medicalised birth. in both cases, there is the potential for a cascade of intervention which is wholly disempowering to the people involved.

i'm worried that my daughter is leaving the world in the same way in which she entered it - painfully, clinically, and attended by people who simply didn't have time and care for her. it feels so unreal that we have come to this.

i have total empathy for people who spirit their children away from the clutches of the system, who refuse medical treatment for their kids, who fight the legal system to retain the right to choose what is best for their children.

through it all though, the one at the centre of this storm remains doggedly compliant - she's the healthcare system's dream, just as she was the education system's dream not so long ago. no matter how they approach her, she continues to smile sweetly at each person who crosses her path.  she is polite and grateful at all times. when the radiotherapy burned her skin to a crisp and instead of a chest she had a weeping, oozing mess, she gritted her teeth and bore it, going back for more each day and chewing on painkillers to help her get through. the only thing she has balked at has been the hospital food.  if i could just split myself in two i'd be home cooking her good, tasty, nutritious food, at the same time as sitting with her in the hospital.  alas, fruit puree and muesli bars is the best i can contribute at the moment.

she is an incredible girl, who teaches me so much about acceptance (or denial - i can't figure out which!), patience and determination in the face of insurmountable odds.

i don't know what i'm going to do without her.......

i'm spending time in the city at the moment, firmly entrenched in the cogs of the 'health' system, and the cancer industry. it's such a dispiriting experience for me. i feel so sapped by the artificial air, the unnatural lighting, the chemically enhanced water.  my hair is dry and brittle, my skin grimy and dirty - breaking out in festy suppurations.  i feel truly feral here. how's the irony, hey?

i guess the heat doesn't help.  i spent the day today with my lovely daughter, her close friend and her mother (also a close friend).  we planned to go to a movie to escape the heat. saw a cracker of a movie - 'pitch perfect' - at the cinema at indooroopilly. that place was HUGE.  there were THIRTEEN different cinemas! i wore a dress with a halter neck and very little in the back and as soon as i sat down i regretted it. i was so aware of the grimy, scratchy seat i was sitting on. it felt like the carpet on a pub floor on my bare back. it was awful. 

anyway, we just hung out in the shopping centre all day, in the airconditioning and the fluoro lighting.  overstimulated by the huge array of STUFF. the sheer amount of it. and each time i see a $10 piece of clothing i think 'how is it possible to produce that and transport that here and pay someone to sell it AND make a profit????' and the whole place seems so impossible in it's very existence... 

i'm getting a bit more used to it now though, but it still doesn't fail to chip away at my spirit.

 

...........i actually just had to take a break from writing this to go and wash my face and brush my teeth...i was so uncomfortably aware of how festy i felt!.....i'm a tad more refreshed now........

anyway, there's also the matter of staying in someone else's house for an extended period. i'm staying with my exparents-in-law, in the suburbs, in the house my daughter's father grew up in. i have my own room here   :)   with carpet    :)   and air con    :)

but it is someone else's house though, ultimately, and i am confined to a room on the topmost, western side, where i read, sleep and obsess throughout the greater portion of each day and night.....geez, it sounds VERY bleak when i put it like that....

i guess that my life is really quite bleak at the moment...there's no hiding the fact!!

all i can hold onto is the wisdom gleaned from several decades of living - the surety that this too shall pass. NOTHING lasts forever in life. nothing. loss is an integral part of gain.  they need each other to form a totality.

and there are always little gems in there....somewhere...sometimes they're really small, and you have to dig around in the shit to find them! but they're usually there!

and so, we just plod along, don't we? mindful of the very shit we trudge through, searching for the glimmer...

isolated, disjointed thoughts running through my mind. there is no beginning, no end to this.
what is 'giving up'? how does it differ to 'giving in', or 'giving over'?
what does it mean when people say 'don't give up'?
what is 'acceptance'?
is there any difference between giving up, giving in, and acceptance or surrender?
i feel too tired to fight - is that a deficiency on my part?

all i hope for is peace, and dignity, for my baby. i don't want her to die fighting. i want her to die feeling at peace, knowing she is loved, and knowing that she lead a good and worthy life, that she will never be forgotten, or replaced.

there is this awful incongruity at play here.  this 'dying' girl seems so vital and full of good cheer.  if only we didn't know about this time bomb inside of her. ignorance truly is bliss......

we've chosen to schedule her radiotherapy sessions at night time, for a number of reasons.  first and foremost is financial - after dark we can access free parking, which is a bonus when parking costs usually hover around $30 for each visit to the hospital.  the other reason is that day time appointments mean hours spent in crowded waiting rooms, staring at bad daytime television which you can never quite hear, or magazines which hold no interest, or old people.....constantly being reminded that this is the domain of OLD people, not beautiful, poised teenagers who are just getting ready to throw themselves out of the nest and into life proper.

by night time it seems the staff have cleared the backlog, and she is seen sooner- sometimes even on time. so we have all day to do things totally unrelated to hospitals, illness and death.

today i took all three kids to the gallery of modern art.  we made stupid hats in the interactive kids space, bickered, annoyed each other, ate crappy food on the river bank - in short, pretended like this was a holiday and we a normal family. tomorrow the little girls are off to visit their aunt and cousin in cairns for a while....trying to distract them from what's going on here....though i wish we could all stay together, forever....i don't want to miss a moment.  i don't want any of them to miss a moment.....

this really is a long, slow, torture.  i don't think i'll ever truly master the art of presenting a happy facade, when inside my heart is slowly breaking. i want so much to have real, fulfilling time all together, while we have the chance, to make some memories to carry with us after she has left us. but i am so consumed with sadness and apprehension for what is to come.....

the dreaded 'twenty twelve' - the end of the world as we know it

my world didn't end on december 21 2012, as predicted.  the end came a day later.  the night of the predicted end, i danced under a bright moon, with friends and strangers on the streets of nimbin.
the following day i took my daughter for an xray (necessitated by a coincidental, or symptomatic, bout of pleurisy) which revealed a 'shadow of concern' on her left lung.  that's all i needed to hear.  in my heart of hearts, i knew that shadow was indeed a concern, and my grieving began in earnest on that day.

i have not been taken by surprise by the diagnosis of secondary, metastatic angiosarcoma on the lungs.

in the two weeks since, the blank canvas of this blog has taunted me.  here's the space i have annointed as my therapy room, yawning it's emptiness at me.  i've written a thousand posts in my mind.

the problem is that i don't occupy any one place for very long.  every morning, i awake with tears stinging my eyes.  my daughter is dying, and i am forced to witness.  as the day wears on,  my resolve strengthens (usually!!) and i swing wildly between a very buddhist perspective of suffering and detachment, through the minefield of mindfulness practice, tarrying a while in denial, and usually ending the day in tears again, railing against the injustice of  this disease which knows no compassion.

how to chronicle this journey?

well, i've decided to continue in the spirit of this project.  i'm told i will be happy one day.  somehow.  people do survive the most awful circumstances, and somewhere out there is someone doing it much harder than me.

so i'll continue to write, as the mood takes me.  sometimes, i'm sure, i will chronicle despair and loneliness. other times, surely, will be hopeful.  but mostly, i'm still aiming for honesty and truth of expression.

so, today started like many others.  woken by my youngest stroking my face, struggling through my dreamscape toward a waking life that announced itself with tears.  swallowing the tears to face the day, and the necessity of providing food for my family.  fielding phone calls from loved ones needing an update, needing connection with us, needing us to know that we are loved.  lying beside my daughter, tears falling soundlessly from my eyes, wondering if there are things she has always wanted to do - hot air ballooning, skydiving?

touching base with the medicos - who do we need to arrange appointments with? what information needs clarification?  musing, why does the public funding of one therapy make it more trustworthy than another which is paid for privately?  speculative medicine is speculative medicine, whether it's funded by the public purse or not.

the highlight of the day is a spot of retail therapy.  only the prospect of losing her could possibly shame me into buying for my beloved the Dead Sea Spa therapy pack on offer at the suburban shopping centre we visit.  the little girls are appeased by new pyjamas, swimmers which fit, and denim shorts with matching plastic belts. i wish my fears could be so easily swept away......

we are home, briefly, and i am forced to remember what it is like, this journey of 'treatment'.  a too brief couple of days back in the embrace of the forest, searching for some normalcy, where none is to be found.  i'll spend the next couple of days avoiding eye contact while i try to play catch up - with the laundry, with work, with friends whose need for connection forces me to face that which is unfaceable.....as i navigate this new world, which claims me despite my resistance.